Promoting Happiness in Autistic Individuals:

A Personal Perspective

Introduction:

The traditional approach to autism is predominantly concerned with focusing on a person’s challenges, rather than building upon their strengths. Programs and services focus mainly upon eliminating or reducing socially inappropriate behaviours , rather than developing practices concentrating on promoting the person’s self-esteem and feelings of happiness. It is therefore not surprising that so many autistic individuals suffer from depression, and considerably more experience extreme anxiety and poor self- worth.

As a late diagnosed autistic, I battled with clinical depression for many years prior to my autism diagnosis, at the tender age of 42! This was due to the fact that I was unaware of the reasons for my difficulties with social communication and social interaction. However, like many autistics, I developed my own coping strategies including “masking” to portray myself as perhaps more confident and self-assured than I was in reality.

This article aims to open discussion about the benefits for autistic individuals of developing programs which promote happiness and well-being; illustrated from my personal experiences, reinforced by anecdotal evidence.

Promoting & measuring happiness in autism

Before describing how an autistic like myself can find happiness and quality of life, I will begin by considering how happiness and quality of life is measured in the field of autism. When researching for this presentation, I was struck by how little attention has been paid to the emotional well-being as a desired outcome for autistic individuals in the field of psychology.

Traditionally, the effectiveness of psychological support and treatments have concentrated on improving cognitive functioning and skills and behaviours, especially social skills. However, does an increase in IQ and a decrease in maladaptive behaviour and an improvement in social skills, with a smarter, more skilled, less challenging, more independent individual equate necessarily to a happier outcome? Does improved cognitive functioning, education and adaptive functioning mean the individual is happy?

Using these analogies, a good outcome means living independently (singly, or with a partner), being employed or in higher education and having friends. Whereas a very poor outcome would be having no friends, no independence, and needing high levels care and support in a home or supported living accommodation. But does high levels of independence necessarily lead to a better quality of life and “happiness?”

Autism and quality of life:

Most research on autism and quality of life tend to focus on the negative impact of autism on quality of life. In 1968, in a follow up study of the 11 subjects of his famous 1943 report, Leo Kanner found that only two of his original patients enjoyed even a marginal satisfaction with life.

A report in 2001 entitled “Ignored or Ineligible? The Reality for Adults with Autism Spectrum Disorders” by Barnard et al for the National Autistic Society surveyed 450 autistic adults through all levels of the autistic spectrum and concluded:

· Only 3% lived fully independently

· Nearly 49% lived at home

· Only 10% could manage daily living tasks without assistance

· Only 2% of low functioning autistics were in full-time paid employment

· Only 12% of high functioning autistics were in full-time employment

· 31% of all adults studied had no social involvement outside the family

· 32% suffered poor mental health

In a later study in 2002 by Selzer and Krause of 405 autistic individuals, 62% of whom were adolescents , entitled “A Profile of Adolescents and Adults with Autism Spectrum Disorders,” had similar findings:

· Of the total sample, only 22% socialised with family members

· And only 14% socialised with someone from school

· 98% of adolescents had difficulty making friends

· 95% of adults also had difficulty making friends

· Over 30% of adolescents had a co-morbid mental health disorder

A further study by Bauminger and Kasari in 2000 entitled “Loneliness and Friendship in High Functioning Children with Autism” found that it wasn’t the number of friends , but the quality of friendships that are predictive of satisfaction or loneliness for autistic children. Despite the common belief that autistic children prefer to be alone, the lack of intimacy, reciprocity and emotional enrichment led to more intense and frequent loneliness compared to their non-autistic peers. Even where there was a structural social network at school, the lack of invitations to birthday parties, sleep-overs or games can have a profound impact upon quality of life.

Future employability may be a better predictor of quality of life than academic achievement. Even though some autistic adults complete secondary education, or even university degrees, they rarely had contentment in terms of job satisfaction, independent living, self-determination and social support. Indeed, although many autistic children successfully complete mainstream education, long-term employment remains low, even if they have the traits that employers find desirable (trustworthiness, punctuality, honesty, attention to detail).

My personal perspective

Often the social component of work and adaptability to new work environments limit work satisfaction for autistics like myself.

For example, even though I would always have called myself a team player and very productive worker in every job that I have had, I have always found it difficult to fit into the social “cliques” that apply to the work-based environment. I have a very strong work ethic, and consider work , by and large, as simply that- work. The social aspects of social positioning, chit chat and gossiping are not what I have ever gone to work to do. Indeed, I have upset quite a few of my work colleagues over the years with statements like “my work takes precedence over chatting or checking my Facebook status!”

Due to my tendency to be tunnel focused when working this has made me perhaps too productive, opening myself up to bullying, harassment or intimidation, and becoming a social pariah at some of my places of work. I have also had to “mask” a great deal in an attempt to “fit in.” Sometimes I have used humour as a defence mechanism or to hide my stress or insecurities.

Social situations and environments can be extremely debilitating for autistic people, and traditional methods of supporting individuals have been on preventing or treating stress and mental health problems, rather than striving for wellbeing and asking autistics “what makes you happy?” In other words we should try to promote happiness by helping to develop strategies that foster and increase positive feelings.

Undoubtedly autistics like myself are more vulnerable to stress due to social and communication deficits and perceptual sensitivities.

How do we measure happiness in autism?

When parents are asked what the most important goal for their child is, the most common answer is “happiness.” Diagnosed as autistic or not, every parent wants their child to be happy. The challenge for professionals in the autism field is how do we measure happiness in autism? And how do we provide an environment that fosters happiness?

Happiness is a subjective concept and is usually assessed through self-reporting, using a tool such as “The Oxford Happiness Questionnaire” (Hills and Argyle 2002). However, self-reporting of feelings can be very difficult in autism. Firstly, self-reports are useless for non-verbal autistics, or those with a significant intellectual disability; where the reliance is on observations by parents and carers. However, even amongst verbal autistics, self-reports are still problematic. Even high functioning autistics may struggle to describe their own thoughts and feelings; and the terminology uses vague, abstract or ambiguous words. Even the concept of happiness itself can be very confusing.

When an autistic man was asked the question “Are you happy?”, he didn’t know whether to answer “yes” or “no”. For example:

· If you have a bad day, does that mean you’re an unhappy person?

· If you enjoy a certain activity, are you happy then?

· And how many positive events are needed to make a day a happy day?

· How many happy days do you need to be happy with your life?

Although autistics may find it difficult to recognise and differentiate their own feelings, in general they can differentiate between a good/positive feeling and a bad/negative feeling. While some cannot easily describe happiness, they know what makes them “feel good.”

Peter Vermeulen (2013) from Autisme Centraal, Belgium and others have devised a way to help people assess their sources of “good feeling” and sources of happiness to improve the quality of life for autistic adults in three different ways:

· The “good feeling” street

· The “good feeling” sensory circuit

· The “good feeling” questionnaire

I would certainly recommend this for anyone seeking to assess the quality of life of autistic individuals.

I mentioned earlier, some of my battles with depression , and touched upon my “masking” and other coping strategies. It’s not been an easy journey, and I still have difficult days, but here are some tips of how I found happiness as an autistic , or neurodivergent, in a neurotypical world.

How I found happiness in a neurotypical world:

It’s not been an easy ride! It began after my Asperger Syndrome diagnosis, as I had that “eureka moment” when my life began to make sense. By the time I was diagnosed in 2007, I had been married for 12 years with 2 children, both of whom had been considered by their health visitor as likely to be autistic, although no one would assess them until they were older (although my diagnosis gave us a foothold on the diagnostic journey!). At this time, I was suffering from CFS/ME and was on long-term sick leave from my job as a civil servant and we were actively seeking explanations for our children’s behaviour and concerns about socialising with their peers. This part of my story is for another time, but suffice to say , I was not in the best of places with my mental health.

My diagnosis, though not a total surprise, made me revalue my life and paved the way for less “masking” and more “being me.” With support from some excellent occupational therapists, I quickly moved from the negative feelings of being inferior and thinking “there’s me, and then there’s everybody else” and “I’m not normal like they are”, to “being differently wired.” This is why my company is called “Wired 4 Autism.” Simply put, us autistics are “differently wired.” Not inferior, or indeed, superior, we simply have a different operating system. Afterall Windows and Mac maybe different computer systems , running different software, but neither is necessarily better than the other!

Autistics now like to use the term neurodivergent to identify with other autistics, and those with similar conditions to the neurotypical norm. I find this very empowering, as although I am a proud Aspie or Autistic, it helps me to identify with a larger, albeit diverse, community.

I think, this helps us to move away from the combative labels of neurotypical vs autistic to a shared humanity.

Shortly after I was diagnosed, I began to work with the National Autistic Society adult services, initially as a volunteer as I was still recovering from ME/CFS, and later as a support worker, team leader, trainer and speaker. At the NAS, for the first time in my working life, I was fully able to be me, the “real me. ” Although apparently popular with staff, I still found a better connection with the autistic people I supported and despite the fact that many were very intellectually impaired and non-verbal , I found communicating with them easier than my colleagues. Here there was no ambiguity or double-meaning!

I have always been too trusting of others, and this has led to some painful lessons. People don’t always say what they mean, or mean what they say. For a long time, I expected people to always treat me well because I believed that I always treated them well.

So how did I make the changes I needed to make myself happier? Through life experiences and self-awareness! By living my life, learning lessons as I went along, and by my wife, family and closest friends allowing me to be, well, me!

One of the biggest challenges I have faced in my life as a high functioning autistic is to sometimes appear normal enough to be seen as “normal” , but not enough to be treated normally, so I have been bullied at school or work over the years. Much of this was because I was expected to behave and interact with my peers and try to “fit in”, and being too self-critical when I failed (or felt I had failed).

Being so late diagnosed (not surprising as Asperger Syndrome wasn’t first named until 1981, when I was 15 and ot a formal diagnostic label until 1994!), for the first 40 years of my life , I couldn’t understand why I was often falling short of my goals and expectations. Diagnosis, awareness and self-acceptance had to come first before I could make positive changes.

Today, I am able to make peace with past mistakes and missed opportunities, and use my personal and professional experiences to make positive changes and, hopefully, educate and inspire others.

Undoubtedly, we could all benefit by having happier lives. For some autistic adults, happiness has been considered secondary to behaviour management , leading to a lower quality of life and feeing of self-worth.

For professionals in the field of autism, there has to be a focus on the principles of positive psychology and concentrate less on the negative aspects of autism , awareness.

Meaningful change is hard, slow to come, and is often achieved in the face of adversity, taking many small steps over a long period of change.

My life is not perfect, and I face many challenges, too, but autism need not be a byword for unhappiness. If I can offer any advice to someone who cares for an autistic person, it would be to identify and allow them to engage in activities or interests that are meaningful to them. For some, it will be talking about their special interests to someone who will actually listen, or just listening quietly to music through headphones.

And remember, what makes one person happy may be unique to them. Sometimes a quiet contented mind can be the happiest feeling of all.

References:

Barnard, J., Harvey, V., Potter, D., & Prior, A. (2001). Ignored or ineligible? The reality for adults with autism spectrum disorders

Bauminger, N., & Kasari, C., Loneliness and friendship in high functioning children with autism

Hills, P. & Argyle, M. (2002). The Oxford Happiness Questionairre

Kanner, L., (1971). Follow up study of eleven autistic children reported in 1943.Journal of Autism and Childhood Schizophrenia, 1, 119–145

Selzer, M. & Krauss, M. (2002). A profile of adolescents and adults with autism spectrum disorders

Vermeulen, P. (2013). I am Special 2: A workbook to help children, teens and adults with autism spectrum disorders to understand their diagnosis, gain confidence and thrive.